what 18-year-old alice wants you to know about being a dementia care partner

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I came across the letter below in one of the dementia care groups I belong to on Facebook. I’m sharing it with the permission of Alice Cole, the amazing young woman who wrote it. There’s more information about Alice and her family at the bottom of the post.

May 2016

Dear dementia care partners everywhere,

My name is Alice. I’m eighteen years old. This month, I will graduate from high school. I have a full-time job, and I’m also a part-time care partner to my best friend Lisa. This is me being happy about getting accepted into the nursing program at University of Alabama:

Alice Cole UAB nursing student cropped

This is my best friend Lisa. She is 53. She is beautiful. She is my sister’s mother-in-law. She has three kids. She also has frontotemporal (FTD) dementia.

Lisa w bunny 1 cropped

I want to share our story with you.

I met Lisa two years ago. At the time, I knew nothing about the dementia. I just knew that this sweet, loving mother of three was deteriorating fast. Lisa has had symptoms for four years, and she was diagnosed with FTD about a year ago. Since then, the disease has taken a toll on her, and Lisa and I have become closer and closer.

After she was diagnosed, Lisa began taking long walks. She would walk miles and miles down a dangerous country road. She would go to her parents’ house or her son’s house, even if nobody was home. Today, Lisa requires 24/7 care. She has little control over her bladder. She repeats the same things over and over again (even things that are untrue). She doesn’t need help to feed herself, but she can’t order for herself in a restaurant or ask for what she wants at home. It’s like somebody took her brain, and swapped it with that of a toddler.

Lisa’s husband Roy and his daughter Sheena (who lives with Roy and Lisa) both have full time jobs. That means Lisa needs someone to care for her when they aren’t there. For the past six months, I have been one of Lisa’s care partners. I spend about eight hours with this lovely woman every Monday, Thursday and Friday. We do all kinds of things together. We walk, go shopping, visit interesting places, play with our pets, spend time with family and friends and just have fun being silly.

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I have maintained decent grades, worked another great job to help pay for my schooling, and have learned so many things from being a care partner with Lisa. Hours of helping her bathe and going to long, difficult doctors’ appointments are not the life of a typical teenager. I have given up a lot for Lisa. And I don’t regret it one bit! It’s hard going out in public and having people laugh because I hold her hand and help her make choices. Lisa makes me laugh and cry (happy and sad tears) many times every day we’re together. She is my best friend. She has made such a big impact on my life. I would not change any of it for the world. I hope one day I will be a great mother like she was and still is. I hope one day we will find a cure for dementia. I love Lisa more than words can say.

I wanted to share my story about being a part-time dementia care partner at the young age of eighteen, and to introduce you to my best friend Lisa. I hope the pictures of Lisa and me make you smile. I am so blessed to be able to spend so much time with her.

Praying for all those affected by dementia.

Alice Cole

 

Positive approach to dementia care pioneer Teepa Snow says as many as four in five families impacted by dementia fall apart as a direct result of the disease. My family is one of those sad statistics. But the Coles and Crofts are an exception to the rule. They are an example of the one in five families who pull together instead of collapsing into bitterness, despair and disputes.

As Lisa Croft’s FTD progressed, caring for her in the best way possible became too much for her husband Roy, and his daughter Sheena to handle alone. Lisa’s son Olen and his wife Sophie (pregnant with the couple’s first child), and Sophie’s sister Alice, who wrote the letter above, stepped up to the plate.

“Lisa lives with Roy,” says daughter-in-law Sophie Croft. “And while Roy is at work, Alice, myself and Roy’s daughter Sheena care of Lisa, depending on who is off work.” Together, the members of the Cole-Croft family circle embrace Lisa to ensure she is never left alone, that she is engaged in life-affirming activities and that she is loved, cherished and cared for in the way she deserves to be.

Thank you Alice for your inspiring letter, and thanks to the members of the Cole-Croft family for being an example to the rest of us. God bless you.

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10 Comments

  1. You are an angel on earth. I can certainly relate, as one who cared for and coordinated care partners for both my parents at the same time. I was the sibling of five who didn’t have a job outside the home and could work my hours as I needed to, which was a blessing for me ( I wouldn’t have had it any other way, so I could help my parents). Most of my siblings helped as they could, with having 9 to 5 jobs, which I was most appreciative of. Anyway, this is not about me…your passion is an inspiration to me and I’m sure to many others, also. You are going to go far with your nursing. Give Lisa a hug and a kiss from me, and give some to yourself from me. Bless you and Lisa’s family.

    Pal Ingold

  2. I am from Roy and Lisa’s younger days. Way younger days… Thank you for helping Lisa! I am sad that the girl I knew has FTD. The last time I saw her was about 8 years ago.

  3. Thank you so much for posting this. Lisa is doing great and the deteriorating seems to have slowed down some. She is SO excited for her grandson to arrive in November. She makes sure everyone she meets knows that Olen put the baby in Sophie’s belly! I caught her the other day sitting in the rocking chair in the nursery, looking at the memory book I made for her. She loves looking through all his clothes and things in the nursery.

    Thank you again for publishing this.

    Lots of love,

    Alice Cole

    • Thank YOU Alice for being an inspiration to care partners around the world, especially those who are young and who might choose a career in a helping profession. Please remember all you learn from Lisa and that your life experience is often at least as valuable, if not more so, than “book learning.” Trust your heart, your intuition and your common sense and don’t let “experts” intimidate you with facts and figures that may have little if anything to do with real life experiences of people like you and Lisa.

      Keep up the good work, and keep us posted on your adventures, especially those with Lisa.

      Love & hugs,

      Susan

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